Monday, May 21, 2012

False Hope?

Every morning I am awakened by a sudden vibrating under my pillow. I turn over and smack my alarm, then grab my pill organizer and choke down 4 tablets of Votrient. I turn back over and curl into a ball, ignoring the nausea that hits in waves as the medication dissolves. I fade back into my dreams for what seems like only moments before my babies crawl under the sheets with me and press themselves into the shape of my curve. I inhale and absorb the warm light breaking through my blinds before starting another day. I go on about my usual business of being a Mommy, cooking up eggs and buttering toast, making beds and rotating loads of laundry, swiping on a thick line of black eyeliner and primping my newly chopped short hair... I live, but since I have started the Votrient I have had a bit more of a bounce to my step. When I look around my new house I think I may actually get to grow a bit older in it. When I eat meat I actually worry about clogged arteries. When I look at my family I don't wonder who is going to take my place. I know the medication Dr. Barth prescribed is only theoretically going to slow my tumors down, but the simple concrete act of swallowing those pills every morning has made me feel empowered, as though I actually have a fighting chance at just a bit of longevity. I don't know why I ever bother to lie to myself, or why anyone would instill false support in a patient in my circumstances, but my neuro-oncologist mailed me a form letter to inform me his practice is closing. What the fuck? Yes I said it. I saw him not 3 weeks ago at which time he told me he wanted to follow me personally, and that I would need to have some specific tests done as time went on, not to mention when he first prescribed the drug he told me it was something really new and special to do this testing and he was excited to be able to attempt to help me. At our last visit he had his nurse draw my blood, and told me to schedule our next appointment in 8 weeks. Surely I recieved this letter by mistake? Perhaps it was sent out to all of his patients, but he would be contacting me for further instruction? I called first thing this morning to find out. The staff was completely apathetic! Yes, his practice is closing. No, he wont see me one final time. Yes, he told me to come back in 8 weeks but he made the decision to close his practice a few days after our appointment. What am I supposed to do? Please refer to the list of random yellow-page copied generic neuro-oncologists we sent out with the original letter. He basically told me, "I said Good Day!" What the FUCK. I emailed my regular neurologist, who referred me to Dr. Barth. His PA agreed it did not seem right and let me know he would speak to Dr. Duma immediately being that oh I don't know I'm on freaking targeted medication for uncountable CNS tumors and now on a medication that affects my entire body with absolutely no official medical supervision by the appropriate type of physician!? Absolutely unacceptable. I asked Dr. Barth's office if he can email or call me back with specific final instructions and guess what the response was? "We cannot confirm he will contact you." Wow. As I told his office I will be contacting the medical board and whoever else I need to contact to make my voice heard about this. When I hung up the relay messenger this morning I had a knot in the pit of my stomach. All of the hope I had built up surrounding this doctor, and the things he told me, and the testing, and the medication, getting it approved and taking it every day... Did he simply prescribe me false hope? All of it seemed to evaporate before my eyes, and I couldn't help it, tears welled up. I felt so defeated by my fears and once again betrayed by my body. Since my brain was so swollen last year I have yet to regain complete mental clarity, and I feel like everything around me is a haze at times. When faced with a heavy heart I want to retreat to the ease of sleep and blankets and care takers, but it is not an option. I refuse to crawl into bed and give up. Now, I have to stop ranting, think clearly, and take care of myself FIRST. Dr. Duma has already recommended another neuro oncologist. I need to research him before I share about him or decide to see him. Dr. Duma's PA that always has my back said that he is really good. I will have all medical records transferred over by the end of the week and get an initial consultation scheduled. I tend to choose doctors based on recommendation, similar outlooks on treatment, and then gut instinct once I meet them. So we shall see. We shall see.


JesykaRachel AshleyErin said...

WHERE do I start? Like I've mentioned before, you give me faith, power, love, and have turned my life around. I follow most of everything you do, like some battered lost dog looking for a pack leader. And here you are, as tiny as can be, with the punch and power to be strong, willful, and brave. You give me hope, that one day, even just for a minute, the world is amazing. You have changed the way I think and feel as a human. I have compassion, but you bring me to tears with what you have been faced with; not just NF2, but the daily challenges you can't walk away from. I love you like the world loved AOL back in the day! :»)

Tammy Benson-O'Brien said...

I am so sorry this doctor didn't have the vision to think about the patients. What a jerk. Don't you wonder if those people have ever dealt with life changing medical issues on a personal basis. How can they be so ignorant?

You are an awesome woman & I am glad to know that you have the courage & strength to rise up & find treatment you need. Good luck & I 'll be praying you find the 'right' doctor!

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